CAREGIVER ROLL CALL: How's everybody doing?

[LornaDoone]

Having a tough day today. We have this wonderful new bathroom, and I can't figure out how to help my husband use the new bidet toilet. I have tried the lift, and it seems so frightening. I don't understand how his is supposed to keep his balance. On the other hand, the fancy shower/commode doesn't get him close enough for it to work. Frustrating. Again, wish Joel was here to help me work through the problems.

Do you have an OT specialist that can come out and give you a hand? Feeling for you!

 

[pudge44]

I am suprised no body has come forward to advise you on what is a difficult task, I wish I could help you, as to Joel why is he not here?

 

[BarryG]

Kim, you must have missed this, sorry

https://www.alsforums.com/forum/memorium-memory/14770-joel-home.html

 

[Tom's Support]

I'm back. Answer to aKjo's question "why get off the meds?" Many reasons, one Tom rides me about being CRAZY), Two, I don't like the electrical twitchies that come with when you forget to take the stupid pill and most importantly, I have decided that no matter what else, I come FIRST! Because of this I get my time away at Yoga, I go see or go do stuff I REALLY WANT TO DO, and, yes, getting away from the big downer makes me happier. I feel strong, have weaned down and been completely off the meds for two weeks and actually have no fear of going back. I still have lorazipan for emergencies, but just holding them makes me feel like I can deal with it.

I won't deny that I was really in a bad place and the meds did their job and I don't regret doing something about it, but I think I have become more emotionally independent and so am better able to stand on my feet, my laurels etc.

By the way -- more about selfish me -- I have completed step two of diver certification last weekend. Only the Open Water dive with the dive master and I can go diving with my boy! I am so excited, and this is making Gordie happy too. win win.

Bad note; Tom's visit to Dr. Bagdhalian (Lyme Doctor) on Monday did not go the way he had planned. He was all set to turn the doctor down again regarding going from pills to intraveinous meds because it was Maple Syrup time. This time the doctor, however, didn't even offer up the option. He closed the book and said it had been long enough, he did not see any encouraging signs (body rebound) but the good news was the medication did not do any damage to his organs. (treating for leptospirosis and possibly lyme). Tom was upset, now he HAS to accept the ALS or at least MND diagnosis, but for me it is a relief, I accepted the obvious early on and now there is one less useless trip to the city.

He continued on the negative outlook saying things like "I might as well be dead" so I took the opportunity to speak.

I said , ahem: "You still have two choices. You can continue to be DYING OF ALS, focusing on the things you can't do anymore and lament your life away as you have been doing in abundance, OR you can start LIVING WITH ALS, focusing on the things you still CAN do and doing them as much as possible."

I hope he was actually listening because so much of what I say goes unheard. Time will tell.
This message is long enough, sorry....

 

[LornaDoone]

Things are going a bit crazy for us now. We are now starting to struggle with how much money we should be spending on things now. Our pals has lost most control of her bowels and is having frequent accidents. We will be seeing the Dr about this tomorrow. I am thinking that the time is coming for her to go into a home. We are also looking into getting her on some type of colostomy bag or such. Not sure what they offer. Our pals thinks that we should just spend whatever we have on her. She's not really getting that we need to support ourselves. This has been a challenge. We shall see how it all goes over.

 

[pamloveswalt]

Hey everybody,
I'm new here. We just got my husbands diagnosis last Thursday. (Happy St Patricks Day, right?) We were just married last November, after dating about a year. It took me all this time to find the other half of my heart, and now there is this. Of course, we are terrified. Waiting to get into Duke to see what the treatment will be. Any advice, facts or anything you guys could share with me would be great. I am so grateful to find someone else who knows what we are about to go through. Thank you all!

 

[heymom05]

Hang on, sista, and never forget that ALS is what he has NOT who he is!

 

[LornaDoone]

Big love Pam! We are here for you..

 

[joni51]

Oh Pam my heart breaks for you two. We are here for each other, and you...(((HUGS))) Don't be afraid to ask what you want to know. Folks here will pitch right on in.

 

[brooksea]

Sorry, Pam! I hate seeing another join the forum, but we will support you any way we can.

 

[strikeout]

I can really relate to reading all of your posts. They ALL bring back so many memories of when I was dealing with Denny's illnesses and the struggles, both emotional and physical, that he went through or should I say we both went through. I have been where all of you are and I want you to all know that you are admired! As far as where I am now... It is 3:41am here and once again I cannot sleep. I seem to get nothing done. And guilt, regret, and questioning are part of my life now.

 

[LizT]

How's everybody doing?- unfortunately.... im horrible... again.

 

[CoachMeg]

So sorry to see another new face among us. Today I am at an even keel. We just got back from a wonderful trip and met new friends and enjoyed our family. Last night I was so angry with ALS. This disease is forcing us to do things completely backward - we are doing the things we said we would do when we retire. I hate this feeling of getting it all in before it is too late.

So, I guess I am not as great as I thought. But I put on my strong face and continue to power through. We just don't have any other choice.

Love and light
Meg

 

[babygurl]

Im a bit exhuasted, trying to get everything prepared for my trip but I'm in good spirits for the most part

 

[Miss]

I am literally about to snap . . .